| Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I want to say my health is good but my biggest problem is every doctor I see just looks at me with sad eyes and "reminds" me I am at the end stage of motor neuron disease with hospice probably my best possibility. Your story does sound like mine Paul! I almost wish we would have chased this before I lost the last 30 since that was when most muscles atrophied. I was at 118 in Sept from 211 but am at 140 today which they said was impossible so no quitting here. Just looking at it as if I have not found the right doctors yet. When I get discouraged I just think or Marica, you, Christine and of course my #1 hero, Charm! It seems so much more doable and thank you!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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